In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Sunday, April 11, 2010

Work is underway on a book I promised several years ago to write. It’s extracts from my cancer journal on CaringBridge - the cancer story itself, and how I used everything at my disposal to help my cause: the internet, great medical care, and the power of attitude. Woven throughout are observations on how e-patient principles are changing the process of disease (and health). At the time I’d never heard of an “e-patient,” but what my support community and I were doing exemplified it.

The book's work is being driven by my long-time associate George Alexander, who is also the publisher.

It’s been emotionally hard to dig back through those journal posts, because those were scary times. The chapter I’m working on now is about hope, so yesterday I read Jerome Groopman’s book The Anatomy of Hope. It's filled with stories of being with patients as they faced probable death, and the physician’s journey of learning to help them deal with it.

I cried as I recalled facing my own death. It was accentuated by recent events:

Fellow kidney cancer patient Rick Schleider died last month.

My classmate Don Levinstone lost his fight with pervasive lung cancer last month.

Last week my dear singer-sister Suede's longtime companion dog Angel died. Angel was a miracle dog, an abused stray who lived on a highway median for months before being rescued. Suede adopted her and gave her a life she never would have known. The loss is hard on her.

Today’s CBS Sunday Morning had a segment on children who lose a parent. (5% do, before age 15.) The family photos and the footage of the children’s words, their loss, brought me back to the thought of leaving my family behind.

And that brought me back to my own father’s death in 2005, when I lived a thousand miles away. Traveling to see him wasn’t easy. The last time I left him in the care facility I said I’d be back soon and kissed his forehead. His last words to me were “That will be nice.” All signs were that the end was near, and it was.

That night I attended the annual concert of my sister Amy’s excellent Sweet Adelines chorus The Pride of Baltimore. The headline act was Wheelhouse, a champion quartet whose signature song is When I Leave the World Behind. Irving Berlin's beautiful lyrics flooded me; I sat there with tears running down my face, thinking of my dad's departure from this world.

Today that song came back to me as I heard the children talk. I found Wheelhouse's performance on YouTube, and found myself sobbing with feelings I hadn’t touched in three years, a much needed catharsis.

Here it is; the lyrics are below. (This handheld video is shaky at first but it settles down.)

When I Leave the World BehindIrving Berlin, 1915

I know a millionaireWho's burdened down with careA load is on his mindHe's thinking of the dayWhen he must pass awayAnd leave his wealth behindI haven't any goldTo leave when I grow oldSomehow it passed me byI'm very poor but stillI'll leave a precious willWhen I must say good-bye

[Refrain:]I'll leave the sunshine to the flowersI'll leave the springtime to the trees

And to the old folks, I'll leave the mem'riesOf a baby upon their knees

I'll leave the night time to the dreamersI'll leave the songbirds to the blind

I'll leave the moon aboveTo those in loveWhen I leave the world behind

[2nd verse:]To every wrinkled faceI'll leave a fireplaceTo paint their fav'rite sceneWithin the golden raysScenes of their childhood daysWhen they were sweet sixteenI'll leave them each a songTo sing the whole day longAs toward the end they plodTo ev'ry broken heartWith sorrow torn apartI'll leave the love of God

[Refrain:]I'll leave the sunshine to the flowersI'll leave the springtime to the trees

And to the old folks, I'll leave the mem'riesOf a baby upon their knees

I'll leave the night time to the dreamersI'll leave the songbirds to the blind

I'll leave the moon aboveTo those in loveWhen I leavethe worldbehind

I’m so glad to still be alive, alive to keep loving those things for a few more years. Thanks to all of you who were with me then, and thanks to all of you who work today to make a world of better healthcare.

Thanks for sharing your experience and this clip. I am also a Sweet Adeline (and a fan of Wheelhouse). I love singing, but REALLY love when the music affects others in ways I cannot even begin to understand. Best wishes for continued good health. Dana Dunlevy